My son is 12 and hasn't grown in 3 years.....He is on Deflazacort and his last labs showed he isn't making growth hormone.  His docs want to start growth hormone injections and I am nervous about the side effects.  I read that there can be cerebral swelling and hip dislocation.  I also heard it can make them fall more and they are harder to lift and take care of after they grow so quickly. My son has learning disabilities and doesnt notice or mind that he is shorter than his peers so I wondered what would be the benefit of these injections?  It seems like all side effects and not much good.   Is anyone's else's son on growth hormone injections and have you had any trouble with it?  Did it make it harder to help take care of them at home also?

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My son's orthopedic dr always told us that Kyle was better off short in stature because then the muscle would not have to stretch so much. He has been on deflazacort for 13 yrs now and is about 5' tall

Our son has been on it for about 4 years now and we believe it has done a world of good for him.  We noticed increased strength of muscle and tolerance since he has been on it.  They do not grow a large amount on it because of the steroid, but the physical benefits have been great.  We have not had any poor side effects with the medication other than the bummer of daily shots.  My son is 12, has been on deflazacort since age 4 also.  My 9 year old is taller than he is, but he understands that is just part of the deal.  He still walks full time so we will take that as a win.  Good luck to you!

Hi Jennifer,  how tall is your son now?  My son started deflazacort upon diagnosis at age 5.  He is now almost 11 and is 4'2" but has not grown much in the last couple of years.  Prior to being on deflazacort, he was about in the 85 percentile for height; now he is not even on the chart.  We have contemplated growth hormone injections, but am terrified of the of possible side affects.  Thanks in advance for your feedback.
 
Jennifer Shumsky said:

Our son has been on it for about 4 years now and we believe it has done a world of good for him.  We noticed increased strength of muscle and tolerance since he has been on it.  They do not grow a large amount on it because of the steroid, but the physical benefits have been great.  We have not had any poor side effects with the medication other than the bummer of daily shots.  My son is 12, has been on deflazacort since age 4 also.  My 9 year old is taller than he is, but he understands that is just part of the deal.  He still walks full time so we will take that as a win.  Good luck to you!

Hello Joy -

Our son has been on Deflazacort since age 6. In 2007 we started our son on HGH at age 13, he stayed on it for 20 months, result 2.5 inches of growth PLUS lots of anxiety over "potential" complications (none); In the end he's 4'9", 20years old still able to walk moderate distances. We saw "subtle" increase in strength and height. Would not repeat the medication. Son uses a power chair in college, everyone is the same height sitting down. Paraphrasing our doctor - the mantra, short bones, short muscles equals less cardiac stress. The heart is the number one key muscle in the whole DMD puzzle game sometimes it's overlooked.

Thanks for the responses, y'all.  They have been very helpful.  

Even the thought of having to get a shot produces extreme anxiety in our son, so we've been struggling to make a decision that will be in his best interest.

My husband's belief is "What's the point?  Why put him through daily shots for little benefit?"  My concern is are we ethically bound to give him the shots, considering self esteem issues related to height.

Michael, you remind us of critical issues related to the heart.  It's my understanding that your family administered HGH for your son for some time, but that you wouldn't do it again if you had to do it over again.  Do I have that right?  

Yes, absolutely correct. HGH yields no benefits in fighting DMD. Rather is is a prescription for preying on parents fears and hopes for a cure or slowing the effects of DMD. I believe its usage is proscribed and medically unethical in the DMD community.  It obfuscates DMD, with the "imagined parental glee" of multiple lines on a growth chart.  It does not provide any real benefit in fighting the disease.

Eh, hindsight in this case is a very clear 20/20. We give our son medications that target the disease and/or specific side effects of  DMD, its complications and yield a life extending benefit for Cardiac, Pulmonary, Urogenital, etc. as warranted.

Oh yeah, I suppose someday we will have to deal with Jonathan's excessive drinking, womanizing, rowdy behavior and reckless driving,  for now that's only a hope, as he prefers chocolate milk to a fine 25 year old single malt Scotch.

Here Jon is flanked by classmates who are 6'4 and 6' and his date is the blonde girl, who does not notices his height.

Kids, Go figure???

My son is now 11. He was diagnosed just before age 3 and started deflazacort just after turning 3. We started him on hGH when he was 7. He was still producing growth hormone, but he had quit growing. He was 7 inches shorter than his twin (non-DMD) brother. He was being teased at school and was just miserable because of it. It was a hard decision, though. Had he not been producing GH (as your son) or not enough, then it would have been easy, and we'd start it in a heart beat. But we decided to start. Insurance approved, and he grew just shy of 3" in the first year. He only gained an inch on the gap between him and his brother, but he was happy. He was still the shortest in his class, but only by maybe 1/2 an inch. Now, in 6th grade, he's not the shortest. He loves it.

Did it "improve" his DMD? No. We never expected it to do so either. He did grow so quickly at first that his heel cords couldn't keep up. This required a round of serial casting. Worked great.

I'd do it all again. Now that Sam is using his power wheelchair more and more, we're going to talk to his doctors about if he should still be using them. I do agree that once they're in a chair, height really doesn't matter. Sam is by and large a very happy and easy going guy, but the height thing really got to him. It was the right decision for us and him. Also, he never had any side effects. If he had, we'd have stopped immediately. The most common, from what I've read and been told, is increased eye pressure and/or headaches.

Best of luck in your decision.

Michael, what is your son's mutation? 20 and walking is on the rare end of the natural history. Would you mind sharing anything unusual that you might be giving him? (other than dflz, calcium and vit d)? How are his bones? thanks.

So sorry I haven't had a chance to respond, Had major surgery on the 30th.  We don't regret the GH for our son.  Xavier is 12, deletion of 48-52.  He was always in the 95th percentile on the growth charts prior to starting steroids at age 4.  He is about 4' 3" now.  Our endocrinologist does believe that is does assist with bone strength and can assist in other ways that the body uses growth hormone.  Xavier has done well on all bone scans, we have not had to use any meds for bone strength as of yet.  He did sustain 3 compression fractures last year, however, that was from flying off the slide at school on the first snow fall and he landed on his back.  Honestly any kid would have been injured from the fall, and the fact that he did not sustain further injuries is amazing to us.  My son has no real self esteem issues with height. His cardiac MRI is amazingly clear of damage.  I think every boy will respond to it differently as I know Laurie's son Sam has had fractures.  As with everything in DMD you have to decide what you feel is right for your son, your family and then make that decision and never look back and never second guess yourself.  Good luck.  

Hello Amit - my son is in the ongoing  Ataluren study dealing with stop codons.  In addition to other stuff, he's on a couple of cardiac drugs, a blood sugar control drug, B12 and Juven. He was gaining lots of weight while on Deflazacort and was determined that he needed a glucose control, because long term steroid use caused a type 2 diabetes. So his weight came down from about 125 to around 105 18 months later.  Not to abuse the term "Walking" but we have to lift him up and steady him and then he walks around  in the house. He only walks around in the house as he needs a level environment. And his upper body strength is pretty much gone, but he gets physical therapy 2 or 3x weekly, plus what we subject him to at home.

Lastly, let me apologize a bit on my tone on the HGH, while my son was on it we noticed a marginal increase in strength; but, while he was way under the bar for height, he was making growth hormone at the correct levels. So, more is better right? Perhaps, but actor Sly Stalone a.k.a.  "Rockey" also uses HGH, but not for height, rather to artificially "buff up".  We did a good amount of research before and during our HGH experiment and decided to take him off the drug. As has been said many times, every family has to make its own decisions. on treatment.

 A favorite cartoon of mine from my days as a software engineer and drinking pots of coffee to buzz the 10 or 12 hours of working everyday.... Better living through chemistry - maybe

Growth hormone therapy is not "unethical".  It's prescribed occasionally by endocrinologists at some of the top multidisciplinary centers in the country.  And not before a full disclosure of the risks.  It's hardly unethical.  



Michael Piacentino said:

Yes, absolutely correct. HGH yields no benefits in fighting DMD. Rather is is a prescription for preying on parents fears and hopes for a cure or slowing the effects of DMD. I believe its usage is proscribed and medically unethical in the DMD community.  It obfuscates DMD, with the "imagined parental glee" of multiple lines on a growth chart.  It does not provide any real benefit in fighting the disease.

Eh, hindsight in this case is a very clear 20/20. We give our son medications that target the disease and/or specific side effects of  DMD, its complications and yield a life extending benefit for Cardiac, Pulmonary, Urogenital, etc. as warranted.

Oh yeah, I suppose someday we will have to deal with Jonathan's excessive drinking, womanizing, rowdy behavior and reckless driving,  for now that's only a hope, as he prefers chocolate milk to a fine 25 year old single malt Scotch.

Here Jon is flanked by classmates who are 6'4 and 6' and his date is the blonde girl, who does not notices his height.

Kids, Go figure???

Thanks Michael.

I think cincinnati did a study on IGF and likely have more data on the use of gh therapy in DMD (more than anecdotal). Does anyone have access to what the cinci results were?

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